The Good Fight

The care that Mark has received at Deaconess in the week he has been here has been so deplorable that I feel like contacting Michael Moore and asking him to add another scene to his film SICKO. Today it all came to a head when Mark ran his daily 102-103 temp which started earlier in the afternoon than it had been starting and we could not get a nurse to come to the room for 40 minutes and she only arrived after I went to the front desk to complain. Then she lied and told us that she had contacted Falmouth Hospital for test results that we had requested at noon, when, in fact, she had completely ignored the request. Last night, his BP was down to 70/45. And, all of this was after several incidents in the past week in which doctors have written scripts and requests which have not been followed, medications which never arrived on schedule unless we begged for them, etc. You would just be APPALLED at what has transpired...or what hasn't!! We are even considering an ambulance ride back to Falmouth Hospital to be treated by Dr. Shuttari, his pulmonary doctor, after they finish the final photodynamic therapy treatment tomorrow so that he can get a better quality of care.
It takes a lot to push Mark over the edge, but he finally"lost it" and we began requesting supervisors, etc. who were attentive and openly admitted that they had screwed up numerous times. I could go on and on with incidents but will leave it at that. In any event, Mark has been running a high temp every day and still has pneumonia symptoms despite the new IV antibiotics which were finally added two days after they were supposed to be started. He has now been on them for 36 hours and his symptoms are worse than ever and temp going higher than ever. He gets weaker by the day and the HUGE concern he has is that the oncologist can not start chemo until he has gone 3 days without a temp and meanwhile, the tumors are growing and spreading.
Wednesday is the final photodynamic therapy treatment and they will "wash" the airway and see if they can get a better idea of what is going on and what is causing the problems. Of course, after we began to complain to the "higher ups" they began to order all sorts of tests, x-rays, cultures, etc. that should have been done a week ago and doctors and nurses were at our beck and call. Basically, they have been all pumped up about doing this fairly new photodynamic therapy and using him as a guinea pig and have had no interest at all in his pneumonia which is why he was sent to Boston to begin with!
So, we just don't know what tomorrow will bring, we still don't know what time the final surgery is scheduled and we don't know whether we are coming or going. I'll fill you all in when we "get a grip"!!